Isa-Bella focuses on accessibility
Isa-Bella Leclair has been living with Parkes-Weber syndrome and primary lymphedema since she was born. She originally shared her story in Pathways (Fall 2016) and as the luncheon speaker at the CLF National Lymphedema Conference (2017). She was a 20-year-old student at the University of Ottawa at that time. We recently caught up with her to learn how she is doing, six years later. The following is from an interview with Anna Kennedy.
QTell us how your interest in accessibility was sparked?
My Master’s thesis focused on the responsibilities that civil engineers have towards ensuring that the built environment is accessible to everyone, especially people with disabilities.
Q
Is your current role something you pursued early and wanted to do?
I tend to follow opportunities that come my way. Even the research that I started during my Master’s happened because I realized accessibility is not really a focus in civil
engineering, although it should be. While I was doing that work, I got connected with people at the Parliament and landed this job. They are rehabilitating a lot of their building and our team makes sure that their designs are accessible. This job is right up my alley. But if you had asked me three years ago, what
Isa-Bella Leclair is an Acadian from New Brunswick, currently living and working in Ottawa. She completed both her undergraduate degree and a Master’s of Applied Sciences in Civil Engineering. She currently works as a project manager and engineer with the Universal Accessibility team at the Parliament of Canada.
do you want to do, I would’ve never told this because I didn’t know it was a career.
QWhat field of studies would people normally have who are studying, consulting and working on accessibility and disabilities?
My team is very small with only five people; two urban planners, one other engineer and a policy analyst. There is a lot of work being done on standards and this requires a lot of policy analysts. There are also those who are designing the buildings; architects, urban planners and engineers. The community of people with disabilities is also involved because they’re the ones who understand the needs. We’re listening to them and then using the experts in the building environment to make sure their needs can be implemented or designed in a way that’s sustainable and holistic because a lot of it intertwines.
QAre you able to tap into your personal lymphedema experiences?
Yes. We work with a lot of accessibility consultants who have more than 30 years of knowledge on a variety of people with disabilities. People with lymphedema would fall under many categories; whether it is stamina, dexterity or even invisible disabilities. It’s making sure that buildings are designed in a way that you don’t even really think about it; that those people can take a seat if they need to, that routes are designed in a way that you don’t need to walk too much and that there are access points beyond stairs etc. We want to make sure that none of the groups are overlooked. It needs to be a really broad approach for everyone. In the past, accessibility has really focused on people with very specific mobility issues, who are using mobility devices such as wheelchairs. But we’ve come to realize that it goes way beyond that. And so, it’s been really good to use my experience of what I’ve lived to make it easier for me to understand those needs.
QHow is your lymphedema different from when you were a teenager?
During that time period I was adapting to change and how things were growing and swelling. Since the last time we talked, it’s been very stable and very manageable. It’s just a thing that I have to deal with every day but if I put my compression on and make sure not to do too much, then I know that it will be fine.
QHow do you manage your lymphedema?
It’s mostly through compression; I get measured regularly. I sleep with my bed elevated, which works well for me. It’s also knowing my own limits and to be mindful of that.
You had such a positive impact on me when you spoke at the conference. Here you were, a young teenager proudly wearing a short skirt on stage and showing your compression garment. I felt humbled because being much older; I kept hiding my lymphedema as I thought people were staring at me. I still
who are using mobility devices such as wheelchairs. But we’ve come to realize that it goes way beyond that.
remember that as a pivotal point; my aha moment. I thought, “If she can do it, then why am I thinking it’s such a big deal?” That’s wonderful. I’m very happy to hear that.
Q
It is unusual for someone at such a young age to have such a strong positive image. What do you attribute that to?
https://www.canadianabilities.org
https://www.monarchce.com
Put meaningful effort into having confidence and positivity. Ensure contentment comes from you and not from others. A lot of people need external validation and having others say positive things about them.
I received incredible support from my family and community when I was younger. I come from a very small town in northern New Brunswick, and I think that had a lot to do with it. Growing up, it felt almost like the people around me at school and in town knew about it and accepted me, so why would I hide it? I also traveled quite a lot as a kid with my parents and my sister. We loved
the beach and everything to do with water sports. Having my twin sister helped a lot, because it could be an example for me “if she’s doing it, why shouldn’t I be doing it too?”
I was born with a positive outlook. It’s always been my thinking that if I go to the beach and I decide to not wear a swimsuit or not go swimming because I’m afraid
people will stare, then it’s just letting them win. It ends up with me not enjoying myself. So it seems logical that, if I put on the swimsuit and if I go swim, then I can have a really good time. There are moments when people stare (people have even taken pictures) or people ask questions. But the fun would not be there either if I were to just hide. I know that it’s a hard realization to come to and it does take a lot of work and energy to say “This is okay. This is a choice I took,” and seeing why it’s the good choice.
I was also scared of what people would be thinking and I worried whether they’d be staring? However I came to realize that 95% of the people are not looking at my leg as I think they are. They’re looking at my face as they are talking to me a nd they’re not staring down. If they do notice, it’s opened up all sorts of conversations I never thought I’d have before.
QDo you have any advice or helpful tips for someone who is experiencing lymphedema during their teenage years?
Put meaningful effort into having confidence and positivity. Ensure contentment comes from you and not from others. A lot of people need external validation and having others say positive things about them. Whereas, if you’re able to work at finding that in yourself, then that will lead to being more assured and more confident and just being more positive overall. But it does take work. People often ask me, “Oh, how do you do this?” as if it was just simple. It might look like a simple thing, but from 26 years of practice, it’s something that I’m used to and it comes quite easily because, to me, there’s no other option. But I really understand how if it’s someone, for example, with secondary lymphedema that hasn’t had to deal with it his or her whole life, then it could be more difficult because it’s not something you’re used to.
QYou grew up with primary lymphedema from the start and that can be seen as an advantage rather than the shock for people who receive the diagnosis for secondary lymphedema and think their life changes overnight.
My initial diagnosis was Parkes-Weber syndrome and Klippel-Trenaunay syndrome. Both those diseases are key indicators of capillary, venous and arterial malformation, that also affect your lymphatic system, so that’s what makes it primary lymphedema. It was around the age of six or seven when I realized that how I looked was quite unique, and I started to process what that meant. I spent a lot of time with family and friends and no one really made an indication that I was different. And so, I kind of grew up from a really young age knowing that it really didn’t matter. LP
Thank you Isa-Bella. It was so nice to see your positive shining face on this Zoom call. Let’s stay in touch.
